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Tall Cell Subtype, maybe RAI avid, TG levels are extremely high
Hi!
My mother (58 years old) had a total thyroidectomy in January 2023. We didn't know it was cancer before the surgery, and we only went in because the lump in her neck got really big. On the operating table, they had to scrape the thyroid gland off the windpipe because it has invaded its walls. That's what the doctor told us. We later find out that she has the Tall Cell subtype DTC, Stage 3. We went for a round of radioactive iodine treatment but doctors suspected she may be avid to RAI. After the surgery and before the first RAI treatment, the TG levels was 1800. After the treatment, there was partial RAI uptake, so doctors suggested for a second round. However this time when she did blood work after having stopped taking levothyroxine for a month, her Tg levels came around 1200. Should I be worried? Is this indicative of distant metastases? The doctors have told me that if her lymph nodes (1.7×0.8 cm) do not take RAI in this round of 100mci, they will put my mum on Lenvatinib. I am scared about its side effects, and my mum has hypertension and anxiety and depressive disorders. Is there anybody else who have been in such a situation? What should I do?
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Yes. I was diagnosed with Thyroid cancer in 1991 . Had 2 surgeries, complete thyroid removal and some parathyroid, in Sept1991 with a massive RAI treatment in Oct 1991. Then another RAI treatment in Nov 1992 when I had significant return.
I was also placed on high doses of thyroid hormone .
I am 34 years since first diagnosis.
Hei brockme,
thanks for your reply, I have a lung metastasis from thyroid cancer and i am scared. RAI treatment don't work for me and the doctors are talking about Lenvatinib. I have heard bad things about this medicine. I am from norway.
I am so sorry to hear that. I do understand that it is very scary. That is a very normal reaction to this situation. I felt the same way when I found out I had metastasis as well. I have not taken the medication you mention as it was not developed then. So my options were different. I have heard and researched some articles and read good things about the medication stopping tumor growth , with limited side effects. Every medication has possible side effects unfortunately. We have to weigh the benefits against the possible negative effects. I was told that because my cancer was so aggressive I would have very limited time to live. So we treated it aggressively, because I was young. Yet I knew there would be possible side effects. I am living with some of those every day, but I got to see my children grow up and now, my grandchildren. It's all a balance.
I would ask for a second opinion, and then make a decision. Try not to let your fear make you paralyzed into not thinking things through. That can happen to us as a normal part of a scary situation. Maybe you can find someone to talk this through with? A therapist, a faith leader, pastor or hospital chaplain? As a Chaplain, Ive learned that Just talking about scary things we experience, with someone we trust, can help us process them in our minds better.
You are in my prayers.
Thank you for your answer. What medicine are you taking and how long have you a lung metastasis from tyroid cancer? And thank you for inkluding me in your prayers, i need that.
Hei, I am diagnosed thyroid cancer with spreadning to the lungs march 2025. I am about to start with Lenvatinib and I am scared too with the sideeffects. I am 65 years old and live in Norway. Has your mom start with Lenvatinib already? If so, how is she?
Hei again, can you tell me what medicines you are taking then?
For my particulate cell type my options were limited to surgery, full removal of thyroid and partial parathyroid, RAI treatment with hospitalization due to dose, and then "suppressant " doses of thyroid hormone replacement medication. Armour initally and then Levothyroxine eventually for my specific case . I have regular testing to ensure my levels are appropriate to supress thyroid cells growth.
Unfortunately the high levels of thyroid hormone drug have had other negative affects on my body, so we have had to reduce the levels in the last few years
It's a balance. Again, for my specific case.